In June 2024 Diabetic RetinaScreen Programme Manager Helen Kavanagh travelled to Uzbekistan with the WHO to help the country establish a pilot for population retina screening for people with diabetes. Here she tells of the impact Ireland is having on improving lives around the world, and what she learned from her experience.
In Uzbekistan in central Asia, sight loss due to diabetic retinopathy is all too common. Every week, district nurses meet people at their clinics who have lost their sight from this preventable eye disease. People with diabetes can develop retinopathy over time, even if they are effectively managing their diabetes and feeling well. Population screening at regular intervals can create a picture of your eye health over time, and provide treatment if needed. However, with a low level of understanding amongst the public - and general healthcare workers - about how retinopathy develops, Uzbekistan faces challenges in promoting population screening as a good thing to do.
I visited Uzbekistan as part of a World Health Organization team led by British consultant Professor Simon Harding, to create a toolkit for countries looking to establish retina screening for people with diabetes. It is estimated that 1.5% of the country’s 35 million-plus people has diabetes.
My role in the team was to describe the critical functions in administering a screening programme; advise on how to establish a screening register; and describe the workings of the call and recall system. This is the structure a screening programme needs in order to communicate results and refer people on for treatment or return them to annual recall.
From our work in Ireland I have a strong appreciation of the value a robust population register holds. The data we get from our register enables us to do a huge amount of work – from understanding where people live and what their eye health profile is, to being able to communicate effectively with them around their screening invitation.
Yet both our countries face similar challenges. Ireland is working towards setting up a national register for diabetes which will give us the full diabetes story for patients, enabling us to fully join up their endocrine care. With all of the people who will be involved in the new screening programme together in the room for the first time, I explained the importance of capturing the screening participant’s details on the register, so that the right person is linked to the right image.
The clinicians in Uzbekistan are a committed group of people, and we worked with them to establish a good framework for a basic retina screening pilot programme. However, there is more work to do. Continued training is needed to strengthen the treatment pathway. And their health system doesn’t routinely provide the public with health information, so public knowledge and understanding of screening is low.
I explained the need to develop a standard set of participant information materials for use across all their health regions, to enable people to make an informed choice about screening and understand what those choices will mean for them. The nurses told us that if people are frightened that this test might show they could lose their sight, they won’t come, so it is important that information about screening does not frighten people about possible outcomes of the disease. There was positive feedback on the non-harm based language in our information resources and that that our resources could be a support to their population also.
Reflecting on my visit, I now more than ever see the value in our systems in Ireland – our professional training opportunities and the rigorous quality assurance we have in our population screening programmes. In our systematic retinopathy screening programme, data is safely stored and we can follow our patients as they move through screening to grading to referral to treatment – a factor that is unique to the Irish system.
Delivering screening equitably is a big focus for us in the National Screening Service. Uzbekistan would like this too. Now, with one person in charge, one register to pull it all together, and new clinical skills and screening expertise, they are beginning on a journey to make it happen.